I have been diagnosed with PA, and found that the only thing that helped my energy levels has been self injecting every few days. When I told the doctor, he ordered a blood test and has since told me to stop self-injecting as my levels were 2000. Has anyone has this sort of experience? My symptoms are the same as before and I still feel a benefit from self-injecting.

I inject weekly ( 1mg ) it’s the only way can I keep well. I’m never tested , but my blood serum levels of B12 would certainly be off the scale . Keep injecting . You are feeling the benefits . You cannot overdose . Best wishes .

I am injecting daily.....have been doing so for two months. My tremors have greatly reduced since doing this & everybody around me, including my GzP has noticed a massive difference in me & my well being. My B12 blood test was technically in range at 285. You excrete out what your body doesnt need. Also the b12 blood test is notoriously unreliable!

If daily injections are helping you then no harm in it......

I do take a basic B complex with folate though. And eat bananas fairly regularly as theyre full of potassium. Just as a back up as am injecting daily. Am hoping that once my healing has progressed I will be able to reduce the frequency.

There is no scientific evidence to say that we should only have b12 injection 4 times a year....no one knows the rational behind this guideline (if there is one!) .

Even 1 B12 injection will stay in your system at a high level for several days... so any high count after an injection should not be considered vaild. Per my dr ... after having read blood work done the day after an injection ...

People in UK with B12 deficiency with neuro symptoms are supposed to get B12 jabs every 2 months. If they don't have neuro symptoms, it's every 3 months.

When first diagnosed did you get loading injections from the GP? This is a series of B12 jabs close together to raise B12 levels quickly. If you didn't get loading jabs at start of treatment, perhaps GP would consider giving them now?

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

Thank you so much for all that. Yes I’m in the UK, and am prescribed injections every 10 weeks. I got loading injections to start with too. The GP didn’t explain why he thought the level of 2000 was a matter of concern. And also seemed to imply that any fatigue symptoms I had were not to do with PA as my reading is so high. He suggested that I should try and get more exercise to increase my stamina. This didn’t make sense to me as I was very active until exercise started making me very fatigued, which is why I went to the doctor in the first place and got my PA diagnosis quite a while ago. I think the symptoms diary is an excellent idea, and I will do that. Thank you for taking all that time to help me!

Hi do try to increase your exercise, it does sound daft if ur fatigued, I have learned not to give into fatigue, it does increase your stamina at the same time as taking yr mind off ur symptoms.

It took me a long time to accept this, my pain can be horrendous, I can read, do exercise, games on my phone etc it’s unreal how u then stop feeling the pain as much, it is a long journey and a even bigger learning curve. You know more about your condition than any1 else ever will. Keep injecting B12, keep an eye on folate, ferritin, vit d. Don’t give up...

My daughter's serum B12 levels were normal, but, when we had a Spectracell test, it showed that she was deficient. Spectracell tests whether B12 crosses the cell wall and it wasn't. All the Dr told me was that she needed to take methylated B12. So, I looked it up and found that it could be a methylation defect. An article recommended to run a 23andme DNA test (because it was the cheapest at the time) and upload the raw data to Genetic Genie to find out. Turned out that she does have the MTHFR defect, but also one that makes her sensitive to methyl groups. So, she takes a combo of methyl, adenosyl and hydroxy B12 in addition to methylated folate (don't take folic acid, it's not the same and high levels are toxic). She has other defects that depletes B12. We recently found a place that she can get a hydroxy B12 shot because the Dr dropped any further investigation into her condition. Despite all of that, she still has energy problems. I identified another defect called the TCN2. It codes for an enzyme that shuttles the B12 through the body. A defect can cause transcobalamin deficiency. This could be her problem. The only treatment is hydroxy B12 shots. It would be good to have your DNA tested to see if there are additional reasons for your B12 deficiency.